{"id":61060,"date":"2025-04-14T13:21:57","date_gmt":"2025-04-14T17:21:57","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=61060"},"modified":"2025-04-14T13:21:57","modified_gmt":"2025-04-14T17:21:57","slug":"elijahs-story-living-with-hecw2","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2025\/04\/14\/elijahs-story-living-with-hecw2\/","title":{"rendered":"The Pettus’ Journey with HECW2"},"content":{"rendered":"

What is your family like?<\/h3>\n

My family is small. I have two children (boys), one of which is a special needs child. He is 7 years old, he is a happy child with a giant smile that will fill any room that he is in. I have a 17 year old who is getting ready to graduate high school. He loves video games and fashion.<\/p>\n

What do you do for fun?<\/strong><\/h3>\n

I love to take my son to aqua therapy, being in the water stimulates him and keeps him calm… and me as a mom, when trying to prevent burn out of the caregiver I enjoy reading, painting, and listening to music.<\/p>\n

Tell us about the biggest hardship you face.<\/b><\/h3>\n

The biggest hardship is not always accepting all that comes with this diagnosis. Sometimes it is a lot to bear.<\/p>\n

\"\"<\/b><\/h3>\n

What motivates you to participate in research? How has participating in research been helpful for you?<\/b><\/h3>\n

I participate in the research because I am interested in learning more about HECW2 because there isn’t a lot of information about it and what ever information I share I hope I am able to help another family .<\/p>\n

How do you feel you are helping Simons Searchlight<\/span> learn more about rare genetic changes?<\/strong><\/h3>\n

I believe by sharing my experience I can help families who are just getting a diagnosis or give answers to confirm some of the things they have noticed about their child.<\/p>\n

What is one question you wish researchers could answer about this genetic change?<\/b><\/h3>\n

Is there a cure, will gene therapy work in fixing the mutation, will my son ever talk?<\/p>\n

What have you learned about your or your child\u2019s genetic condition from other families?<\/b><\/h3>\n

I’ve learned that not every situation is the same and its important to document everything.<\/p>\n

\"\"<\/p>\n

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?<\/b><\/h3>\n

Remember to breathe … it’s a long process but progress will come slowly but surely. Have faith.<\/p>\n

How has Simons Searchlight<\/span> served as a resource for you and your family?<\/h3>\n

Yes, Simons Searchlight<\/span> has been a great resource to me and my family.<\/p>\n","protected":false},"excerpt":{"rendered":"

Discover the inspiring story of the Pettuses.<\/p>\n","protected":false},"author":28,"featured_media":61068,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[16],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/61060"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=61060"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/61060\/revisions"}],"predecessor-version":[{"id":61075,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/61060\/revisions\/61075"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/61068"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=61060"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=61060"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=61060"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}